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An informed choice is the right choice, so I encourage everyone to do their own research.

Treatment is what it is and it isn't what it isn't.

You made a choice for yourself in consultation with your provider. That is what patients need to do. Your decision, however, is your decision and does not necessarily apply to anyone else. That is where I take issue with the theory that "if it is right for me, it is right for everyone like me." Each patient will go on this journey alone (decisionmaking). And rightly so because each person is unique and deserves to be treated individually.

The competing elements of each patient's medical file are only known to the provider. Patient's on sites often take a little information and often expand it into messages that are not only inappropriate, but potentially dangerous to someone else. Information gets stuck in time, misinterpreted and becomes part of a mythology that never was accurate in the first place. This occurs with some doctors, too. I encourage people to discuss issues with the doctor, and I provide the scientific basis to do it so that it doesn't just come from "off the internet."

We do not have accurate measures of treatment outcome. It is still a very inexact science, particularly since the virus can be found elsewhere in the body even on a "negative" PCR. We use it to measure the treatments, not the disease state.

We also do not have much in the way of long term data on sustained viral response. Currently, it is defined as an undetected result 6 months or one year post treatment. Well, the treatment is still in the body at that point. The test will be whether it is still negative in five years or more, and whether it is still in the tissues, not just the blood. We have along way to go and research is producing hope for better treatments that ar safer and more effective.

There is no guarantee that the current interferon treatment will stop progression or that the viral load has a relationship to disease severity. The clinical trial results do not show that this is a result people can count on, so the jury is still out on this. It IS a possibility and it will not be known whether there has been a real result until the next biopsy in 3-5 years. Even then, biopsy itself is not an exact science and each biopsy should be read by the same pathologist whenever possible to ensure the greatest accuracy. This is because a biopsy reading is somewhat subjective. Sort of like the Olympic judges, many elements come together to assign a number to a tissue sample. Pegasys is the first interferon treatment to demonstrate improvement on the liver histology as seen on biopsy. That is something to consider. Ribavirin addresses viral load only and presents much of the risk and discomfort.

Those are simply facts.

The single most important thing for someone with hepatitis C is to be diagnosed. That means tested and followed up if found to be positive. Once that has been done, the world of information, and choice, opens up. I offer information and references, not medical advice, to those who are looking for it. Hence, all the articles and refernces I put on the website that back up what I am writing.

There are definitely patients who should consider treatment with the interferon products because they have a situation whereby the risk are definitely worth the potential benefit. There is no question about that. The trick is in sorting grain from chaff (fact from marketing hype) in making that decision. Doctors are no less subject to that problem than the rest of us.

The research overwhelmingly shows that hepatitis C is not a death sentence for the majority of patients. People will likely live a normal lifespan with or without treatment. We have 50 years worth of medical records that demonstrate this. That is good news, in my opinion.

Taking care of yourself by not smoking, drinking alcohol and by making good choices has shown to be potentially as good as treatment, without side effects. Early diagnosis and close monitoring are the key to this strategy. This is a disease that can be managed quite well. This is also good news. It applies to the majority of patients with hepatitis C.

As I see it, patients are more often scared into a treatment they may not need, rather than scared away from a necessary treatment.

The disease is life threatening if it is advanced due to poor choices or because a patient was not diagnosed in time to make better choices. In rarer circumstances, a patient will progress regardless due to host immune factors or something we have yet to identify. This is why, treated or untreated, patients need to be carefully monitored on a regular basis. Many treated patients progress in spite of the treatment, so monitoring is crucial for them, too.

There are no guarantees no matter what decision is made. The research favors self care and prevention of liver disease through good lifestyle choices.

But the single most important factor is early diagnosis. The patient not only has choice, but control as well.


I hope this helps,

thanbey



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[This message has been edited by thanbey (edited 10-04-2002).]






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